Daily Life

Diabetes Support in Ireland

When you live with type 1 diabetes there is SO, SO MUCH information to learn, especially in the early days. So much, that I don’t think it is possible for any health care professional to cover absolutely everything – how could they? Then, as they years go by, we are considered the experts, and so information relevant to us falls through the cracks. One of the major benefits of diabetes support groups is that it can fill in a lot of those information gaps; such as where to register to get your many, many health checks, such as feet and eyes or if your clinic has structured education programmes. A support group also helps you to stay updated as the health information changes, which it does all the time. And it also lets you know that you are not the only one living with diabetes.

In my opinion, diabetes peer support is as important in your diabetes management as your health care providers. A support group provides opportunities to share experiences and to learn from one another. They encourage strength and resilience. Very often it’s the piece of diabetes management that you never knew you needed.

ConnecT1D in Seattle say that “people with T1D who connect with others with T1D tend to make shifts in their lifestyles that add up to better T1D management, better health and greater satisfaction in life.”

Diabetes Forecast, the American Diabetes Association’s monthly magazine says that “Much of the research on peer support has involved people with diabetes, and the findings are significant. According to a recent report by the National Peer Support Collaborative Learning Network, of 20 studies on peer support and diabetes published between 2000 and 2012, all but one found social support to be beneficial.”

It doesn’t matter if that support comes from the virtual world of social media or from face to face contact. Although, I feel that you can’t beat face to face meetups.

I believe that a diabetes support group only needs two people to meet over a cuppa to get started. That might be a simplistic view of it but that’s what it is. I suppose it helps if those two people get on well too.

If you are interested in becoming part of a Diabetes Support Group we have a list that we try to keep updated.

Diabetes Support Groups in Ireland

Another way to get connected to your type 1 diabetes community is to come to Thriveabetes 2018 in Dublin on Saturday 24th February, where you will meet, at least, 100 adults with type 1 diabetes and at least, another 100 parents of children with type 1 diabetes. Now, that's a lot of support.

Register here for Thriveabetes 2018

Sunrise Foundation Diabetes Project

A few of you will have come across a FaceBook post in the Diabetes in Ireland Private Group from Debbie Davis who helps the Sunrise Foundation collect up unused and unneeded diabetes supplies such as old redundant glucose meters and test strips which are then send to underprivileged families with diabetes in Africa. I wanted to find out a little more about the Sunrise Foundation and the work that they do, so Debbie very kindly put me in touch with Matilda Chongwa the CEO. Matilda has written this week’s blog post about her foundation.

SUNRISE FOUNDATION INTERNATIONAL IRELAND.

What is the Sunrise Foundation?

My name is Matilda Chongwa. I am the CEO of Sunrise Foundation. 31 years ago, my mum was diagnosed with diabetes in Cameroon in a little village called Bali Nyonga in the North West Region of Cameroon. My siblings and I were all very young and did not know what diabetes was all about and the only thing we were told by my dad was that my mum was going to die because she was suffering from a sickness that she has to be on medication throughout her life. She was very ill and helpless in the hospital. She lost a lot of weight and she spent a whole year in the hospital. When she came out of the hospital she was always on medication and even now her life is all centred around medication and insulin.

With this in my mind, I was always thinking of ways to help my mum and others in the same situation. My mum was the first to be diagnosed with diabetes in the family and some of my aunties and uncles who were diagnosed after my mum died because they could not afford medication. Diabetes medication in Cameroon is very expensive and a lot of people cannot afford and they died on regular basis.

 

THE WORK OF THE SUNRISE FOUNDATION

When I came to Ireland I thought it was the right time for me to create awareness and support people with diabetes in Ireland and most especially in Africa where a lot of them are dying. The worse is that parent who cannot afford medication turn to invest on their health with the little they have and the children cannot afford education. Most children from families with diabetes cannot afford education so one of the things we do at Sunrise Foundation is education sponsorship for children from extremely poor families with diabetes in Africa.

What we have achieved so far:

  • We have successfully organised so many diabetes awareness events in Ireland. Where we get Irish medical doctors to talk about diabetes
  • We donated €1,000 to Diabetes Ireland.
  • We donated €400 to Diabetes Mater private.
  • We have also celebrated World Diabetes Day in Ireland with a Fashion show {Fashion Against Diabetes}
  • We have taken Irish Diabetes Consultants, doctors, and Sunrise volunteers to Africa for free screening and awareness on Diabetes and High Blood Pressure
  • We have been featured on TV and newspapers in Ireland and Africa because of our work with the Sunrise Foundation.
  • We have won 4 recognition awards from creating health awareness in Ireland and Africa.
  • The CEO/Founder Matilda Chongwa was recognised last year in Germany As an African Living Legend for Diaspora Engagement International, through the African Living Legend Awards. All thanks to Sunrise Foundation Diabetes project.

 

NEXT TRIP TO AFRICA

Our Next trip to Africa is in November and that is why Debbie Davies is collecting, medication, insulin, test trips and glucometers. I met Debbie Davies in 2015 with her daughter Caitlin Davis who had type 1 diabetes. She used to come to Diabetes awareness events organised by Sunrise Foundation and shared her life story about living with type 1 Diabetes and unfortunately, she died last year. She is greatly missed by The Sunrise Foundation Team and those she motivated with her stories and advice on how to live with Diabetes.

After her death, her lovely mother Debbie Davis decided to keep the relationship with Sunrise Foundation by organising collection of diabetes medication for Sunrise Foundation Diabetes project in Africa. We were in Nigeria in May for 12 days and all the collection were donated to St Mary's Hospital in Isolo, Nigeria. This donation was done in the presence of Dr Richard Firth who is a Diabetes Consultant in Mater Private who was the head doctor with us in Nigeria.

If you have items to donate to our next trip to Africa please contact Debbie via email davdebbie@gmail.com or Phone 085 2880489.

UPCOMING EVENT ORGANISED BY SUNRISE FOUNDATION VOLUNTEERS

We are organising the World Diabetes Fashion Show on the 4th of November at the Hilton hotel, Dublin Airport on the Malahide road.

This event is organised by the Sunrise Foundation in partnership with the Diabetes Centre Mater Private Hospital. We would like to invite you all to come and share the day with other people with diabetes who will be sharing their stories and celebrating the World Diabetes Day. We are also looking for volunteers to travel with the team or who want to share their life story to help others.

Sunrise Foundation Contact Details:

Diabetes Offline Support is Important too

“Diabetes is so easy to manage these days.” “Sure he’ll grow out of it by the time he’s 18.” “Is he allowed to eat that??!" and "Oh yeah, my gran has that from eating too much sugar!"

Just some of the things people have said to me when talking about Cayden’s diagnosis for the first time. These statements used to drive me crazy in the early days of diagnosis. I know that people mean well and didn’t make these statements to hurt or offend, they’re just lucky enough to not have to know what type 1 diabetes really is. I was once one of those people.  My name is Pam Kavanagh.  My son Cayden was diagnosed with type 1 diabetes on 12th February, aged 7.  Myself and Cayden attended our first Thriveabetes event in October 2016 and I wanted to share what that experience was like for us and why we are now helping to raise much needed funds to ensure the 2018 conference goes ahead.

 

FIRST WEEK OF DIAGNOSIS

the kavanagh family

Anyone who has a child with Type 1 diabetes knows what those first days in hospital are like. That day, when you're told your child has diabetes. It’s a rollercoaster of emotion.  You’re in a bubble not quite taking in the enormity of it and what is involved in managing the condition.

Seeing your child take their first ever injection, that’s something I’ll never forget.  How can I do that to him every day?  Then you’re shown how to draw up insulin in a syringe and the best methods of injecting. Four is the floor, you eat X amount of carb for X amount of insulin, and so on… Yeah sure it didn’t sound too bad, pretty straight forward enough until BOOM! -  you’re sent home to start the journey on your own and you very quickly realise what managing diabetes entails and that life would never be the same again.

Guilt set in when I looked back at pictures in the weeks leading up to his diagnosis, why didn’t I realise the seriousness of it sooner.  It felt to me like I was taking home a newborn baby for the very first time only without the joy and excitement.

 

SUPPORT – WHO TO TURN TO

Previously, in times of trouble or strife, the first people I would turn to were my family and close friends but this time it was different. They couldn’t help in a lot of areas as they didn’t understand.  My husband and I felt lost and alone.

I spent hours on Google everyday looking up information, advice, complications, cures, gadgets, technology and each night I grew more fearful and wished I could take his diabetes from him.  Dr Google turned into Dr Fear. I bought every book there was and watched tons of videos.  Information overload.  This created another struggle as there was so much conflicting information out there regarding optimal blood sugar levels, what he should or should not be eating, what we needed to do to avoid long term complications and so on.

Some of what I read also contradicted what we were taught in the hospital too so I felt at a complete loss, who should I listen to.  I knew I had to connect with other parents living in Ireland dealing with the same struggles as us.

 

FINDING THE DIABETES ONLINE COMMUNITY & THRIVEABETES

A few weeks after diagnosis, I was getting my own bloods done in a hospital and got chatting to the nurse and her daughter had diabetes.  She recommended I join a closed Facebook group called Parents of children & teens with Type 1 Diabetes. It was in this group that I saw a post about Thriveabetes, a one day conference in Ireland for adults, children & families living with Type 1.  I got in touch with them straight away looking for more information and received a really lovely email from Grainne, one of the co-founders.

 

MY THRIVEABETES CONFERENCE EXPERIENCE

Thriveabetes 2016 took place at Kilashee Hotel, Naas, Co. Kildare. There was such a great atmosphere in the venue and it was lovely meeting with people I’d chatted to online.  It's hard to describe what it felt like being surrounded by other people who were living with Type 1. In simple terms, the conference felt like a great big bear hug. I was in a room with people that had my back.  I could express my fears and anxieties without fear of being judged or freaking anyone out.

The workshops were split into different groups; Adults with type 1 diabetes were in one room, parents/grandparents of children with Type 1 in another and then three rooms for the children, divided up by age.

The speakers were amazing, in particular Joe Solowiejczyk (or Joe Solo as he's more commonly known) and Gary Scheiner.  Both certified diabetes educators living with type 1 diabetes. Gary has had type 1 for more than 30 years and Joe 50 years.  To see someone standing before your very eyes living well with diabetes for that long made me take a deep breath and smile, I honestly didn’t believe it was possible.  They shared some really great tips for managing diabetes on both a physical and phycological level.

Thriveabetes Conference for Type 1 Diabetes in Ireland

MY SON’S THRIVEABETES CONFERENCE EXPERIENCE

Cayden Making Friends at Thriveabetes

The children were divided into three groups based on their age. There were great activities put on for the kids including puppet making and circus skills workshops and a disco. Each of the children's rooms had volunteers who were experienced in checking blood sugars and dealing with hypos so I had no worries leaving him while I attended the workshops. He made friends for life. The kids also had a group session with Joe Solo. He made a great impression on Cayden. He still asks “When can we go to Thriveabetes again?”

Here's Cayden's experience in his own words :)

Joe Solo at Thriveabetes Ireland 2016

WHAT I GAINED FROM THE EVENT

Hope, courage, positivity, knowledge and a great sense of community. It was the first time since diagnosis where I felt that fear wasn’t ruling me, that things were actually going to be ok.

I learned far more in that one day than I had from months of reading stuff online. The Diabetes online community is like a lifeline but nothing can compare to being together in person and I think we are very lucky to have an event like this in Ireland.  It’s also great for the kids to see other children living with the condition too.

 

WHY MY FAMILY ARE RAISING FUNDS FOR THRIVEABETES

It's simple: we want to ensure that the next Thriveabetes conference goes ahead.  Thriveabetes is organised by a group of dedicated volunteers living with type 1 diabetes.  Organising an event of such a scale like this is no easy task and I admire the time and effort the team of volunteers put in. I try to help out when I can. The cost of running the event is quite significant.  Ticket sales alone are not enough. Fundraising is crucial to ensure the conference continues and to keep ticket prices reasonable.

FUNDRAISING MUSIC EVENT

My husband, Pete has organised a Fundraising Music Event which will take place on Saturday 12th August in the Moat Theatre, Naas, Co. Kildare. Tickets are €15 and available in advance from The Moat Theatre at this link.  We’re hoping to raise all of the funds required on the night and I would be extremely grateful if you could share the event with everyone you know. If you want to support this event but are unable to attend, you can also make a donation directly to Thriveabetes here.

Musical guests will include; Pete Kavanagh, The Cahill Sisters, Hally and special guest, Luka Bloom.  There will also be a raffle on the night with some great prizes (Currently accepting raffle prize donations; please get in touch if you are interested in helping out).

We asked Luka Bloom to perform at this event because his music has played a special role in our journey so far. We went to see him perform live two weeks before Cayden was diagnosed and he signed a CD to Cayden and our daughter Lilibeth.  Cayden was delighted with this and loves the album.  It was the album that we had on the cd player in the car on the surreal journey home from the hospital, not really knowing what was ahead for us.

It’s become one of Cayden’s favourite albums and one he asks us to play a lot so we chanced our arm and asked him if he would perform.  We were super excited when he kindly agreed.

Cayden saw him perform live for the first time a few weeks ago and he was over the moon when he dedicated a song to him :)

I would be super grateful if you could take a moment to find out more about the fundraiser and share it with your family and friends. It would mean an awful lot. Click here to get tickets.

Thank you so much for taking the time to read this and if you've not been to a Thriveabetes Conference before, I hope it has helped give you a feel as to what to expect at the next conference.